M.E Sufferers Malta News List<![CDATA[M.E Awareness Month - May 2007]]>M.E Awareness Month 2007 poster


M.E (Myalgic Encephalomyelitis) Awareness Month 2007

Don’t Let Us Battle It Alone

By Rebecca Sultana

Most people in Malta have never heard of this debilitating chronic condition. This has had detrimental effects on both ME sufferers’ health and well-being. Lack of Awareness about ME has left many feeling misunderstood, alone and emarginated.

Myalgic Encephalomyelitis (M.E.) or Chronic Fatigue Syndrome (CFS) is defined by the World Health Organisation as a neurological illness (code WHO-ICD-10-G93.3). There are at least 250,000 sufferers of ME in the UK alone, many of them children.

At present there is no medical diagnostic test for ME and no known specific treatment or cure.

The first symptoms are often similar to flu, but they do not go away and, in many cases may become worse.

Unnatural and inexplicable fatigue and severe malaise (not relieved by rest) are common ailments of an ME sufferer, however there is an accompanying list that is unique to every individual sufferer. Again, an ME sufferer’s symptoms might change or fluctuate during the course of illness and not all people with ME suffer from all the symptoms.

The varying symptoms experienced by many severe ME sufferers may include:

visual problems, vocal/muscular limitations, glandular swellings, general chronic weakness of limbs, cognitive problems such as memory loss & concentration difficulties, slight to severe migraines, problems with balance and fine motor control, muscle/nerve/joint pain, hypersensitivity, increased sensitivity to bright light/noise/ odours and medication, disturbed sleep/insomnia/nightmares, poor temperature control, low-grade fever, poor circulation,  cardiovascular symptoms,  digestive disturbances and intolerance to certain foods (particularly wheat & diary products),  neurological disturbances and moodiness or depression (brought on by the condition’s difficult recovery).      

There are also different stages of ME ranging from slight to severe. Some ME sufferers are mildly affected and manage to juggle work and rest. People with severe ME are bedridden and need 24hour care.

ME is not a contagious illness and some studies have suggested that it could also be a matter of genetics. Although the cause or causes of ME are not fully understood, the most common triggers are:

Viral infections like –

  • Glandular fever and viral meningitis;
  • Physical injury, or trauma-like accidents, or operations
  • Bereavement, or other emotional or stressful circumstances

It has been estimated that 20 per cent of ME sufferers in the UK regain full health within two years, but around 60 per cent never regain their previous level of health and up to 20 per cent become permanently disabled. Those patients who are given a period of enforced rest from the onset, have the best prognosis.

ME is a multi-system illness and requires investment in biomedical research to provide treatment and a cure. The recent case of Sophia Mirza, who died from ME, shows the urgency of funding research into treatments and in finding a cure. ME is five times more prevalent in the UK than HIV/AIDS.

If you would like to know more about ME, log on to: http://www.afme.org.uk ;  http://www.meassociation.org.uk; http://www.investinme.org

During May (ME Awareness Month) 2007, events up and down the UK will raise awareness of ME, with 12th May (ME Awareness Day) being the focal point for the month.

ME Sufferers (Malta) is presently building a website ( http://www.mesufferersmalta.org)  with the aim of informing people about ME, and offering support to all M.E sufferers in Malta.

ME Sufferers (Malta) is not yet in a position to organise large awareness campaigns, however our growing ME email support group, made up of people of different ages and from all walks of life, is doing its small part by spreading the word through email.

If you happen to be an ME sufferer, their family, friend, or carer and wish to be part of the Maltese support group, send an email to friend@mesufferersmalta.org

Thank you for taking the time to read this news release and thus making a difference in someone else's life!

29th April 2007

]]><![CDATA[ME Sufferers should be included in Social Policy - AD]]>http://www.alternattiva.org.mt/page.asp?n=newsdetails&i=14168

Alternattiva Demokratika - The Green Party expressed its support of 'ME Sufferers Malta', a support group for patients suffering from various degrees of ME  (Myalgic Encephalomyelitis) and disability. May is ME Awareness month. Similar to MS, ME is also a disabling neurological condition (as defined by the World Health Organisation WHO-ICD-10-G93.3) with a variety of symptoms that include dizziness, pain, cognitive problems, and overwhelming fatigue. Researchers believe that ME may be caused either by an enterovirus (like polio), or by a newly discovered retrovirus, XMRV, which is also implicated in prostate cancer.

Michael Briguglio, AD Chairperson, said:'Many sufferers of ME are housebound and often bedbound most of the time; due to the fluctuating nature of their illness they are not always able to do the awareness work they wish - sometimes they just have to stay in bed. Unfortunately they are not being given equal recognition by the Government as other patients for services and benefits as other people with disabilities and chronic illnesses. AD strongly appeals for changes in Malta's social policy legislation through which such persons may be socially included for equal rights as others with disabilities and chronic illness. AD also endorses the appeal of ME Sufferers Malta so that blood transfusions from ME sufferers are prohibited due to possible transmission of ME' .

Bernardette Mercieca, AD spokesperson for Health, added:'Official statistics on ME in Malta are presently unavailable. However, after analysing estimates abroad, Dr John H Greensmith from ME Free For All.Org  (www.mefreeforall.org), speculates that around 800 people, including children and elderly people, are genuinely suffering from ME in Malta; although alarmingly many remain undiagnosed and/or misdiagnosed'.

'Malta's lack of policies that help ME sufferers is resulting in a tremendous impact on sufferers' and their families' standard of living, forcing some to live below the bread line. People with ME are also being refused Home Help and Care and other desperately needed services (such as housing, social care, home tuition for school children, respite care for the severely affected) that would alleviate some of the hardships and burden faced by sufferers of such a devastating illness'.

'AD therefore appeals to the Government to give due importance to ME also in terms of awareness, both amongst the medical profession as well as amongst various sectors of the public service'.

More information of ME Sufferers Malta can be obtained from www.mesufferersmalta.org]]><![CDATA[M.E Awareness Month - May 2008]]>
The last 3 years have been difficult for Denise because she did not accept her condition fully.  As a result her relationships with friends and teachers were strained due to the fact that she did not explain what she was feeling and her friends thought they were being rude if they asked.

So as this year she is attending a new school (Sixth Form), she has decided to start afresh. On her first day at school she spoke out about her different needs, what she could manage to do and what she couldn't.  She was surprised by the students' and teachers' response.

Taking heart, she decided to do the Systems of Knowledge project (a very important academic project) about pushing for ME Awareness.  This entails a lot of energy and work on her part as you can imagine. Financial support was difficult to find however a generous anonymous sponsor has answered Denise' plea and offered to help.

Mr Brian Grech, the photographer chosen for both the poster and the leaflet came up with the idea of using Denise for the poster. Her parents are presently distributing Awareness posters and leaflets in hospitals, clinics, schools and where ever will make a difference to our cause.

You may download a copy of Denise' work from the "Downloads" section below.]]><![CDATA[M.E Awareness Month - May 2009]]>

PRESS RELEASE

May is M.E. Awareness Month

International ME Awareness Month 2009 is a worldwide collaboration of ME charities and organisations aiming to raise awareness of the neurological illness myalgic encephalomyelitis (ME).

Myalgic Encephalomyelitis (M.E.) is defined by the World Health Organisation as a neurological illness (code WHO-ICD-10-G93.3). With at least 250,000 sufferers of ME in the UK alone, many of them children, ME is estimated as costing the UK economy £3.5 billion per year. ME is five times more prevalent in the UK than HIV/AIDS. In Malta there are an estimated 800 sufferers of ME, including children, although many will be undiagnosed or misdiagnosed. There are no official statistics.

At present there is no medical diagnostic test for ME and no known specific treatment or cure. The lack of support provided to sufferers by the medical profession is the cause of much frustration and emotional distress. It is not unusual for someone who is feeling extremely ill to be told “just forget about it and get on with your life” – as if the ill person had a choice. Unlike abroad, Maltese sufferers are denied the benefits and services offered to people with other disabilities, sometimes half as incapacitating as M.E, because M.E is not listed as one of the conditions covered by Social Security legislation.

The varying symptoms experienced by many severe ME sufferers may include: -
visual problems, vocal/muscular limitations, general chronic weakness of limbs, cognitive problems such as memory loss & concentration difficulties, brain fog, problems with balance and fine motor control, muscle pain, malaise, hypersensitivity to light & noise, sleep & temperature disturbance, cardiovascular symptoms,  digestive disturbances, neurological disturbances.

If you are an ME sufferer, or think you might have ME, get informed by logging on to: http://www.mesufferersmalta.org or contact us by filling in this form.


This year M.E Awareness posters were designed by Joss Morton, who kindly made amendments to suit Malta and our support group; and provided by Dr John H Greensmith (M.E Free For All).]]><![CDATA[AD calls for more awareness on 'Invisible Illnesses']]>www.alternattiva.org.mt

by Ralph Cassar  PRO

'Alternattiva Demokratika has always been on the forefront  in increasing public awareness on issues related to the  environment and its  impact on health and social life.  The 8th and 12th September are dedicated to  Invisible illnesses, which are those medical conditions which are not outwardly visible to others, including health care professionals,'  said Mary Anne Zammit AD Spokesperson for Health and Social Protection.

'Our health is constantly at risk especially due to stress and pollution amongst other things, which are increasing diseases and illnesses. Whilst visible illnesses get the necessary support and understanding, invisible illnesses  including a whole range of illnesses such as fatigue, migraines, debilitating joint and muscle pain, auto immune related disorders such as fibromyalgia, lupus, chronic fatigue and immune dysfunction syndrome, are more often than not ignored. More often than not these conditions are accompanied by chronic pain where peoples' daily lives are seriously conditioned, with considerable impact not only on their bodies but also psychologically. Raising awareness on these invisible illnesses will help to alleviate suffering and contribute to more research on these conditions which may be linked to genetic and environmental factors.']]><![CDATA[M.E Awareness Month - May 2010]]>
May is ME (Myalgic Encephalomyelitis) Awareness month and ME Sufferers Malta would like to raise awareness about recent bio-medical research on ME and the possible risk of contamination of blood supplies.

XMRV and Blood Donations

Last October, the Whittemore-Peterson Institute (WPI), the National Cancer Institute and the Cleveland Clinic published their ground-breaking research in Science magazine (Lombardi, 2009), showing the possibility of a link between ME and a gammaretrovirus - xenotropic murine leukaemia virus-related virus (XMRV). According to WPI, XMRV is thought to be transmitted through body fluids such as blood, semen, and mother’s breast milk but is not transmitted through the air.

It’s still early days to understand the public health significance of this research and the danger implied; however due to the possible risk of contamination of blood supplies, Canadian authorities have imposed a lifetime ban on current and former ME patients donating blood (http://tinyurl.com/26ml2te). New Zealand is following suit (http://tinyurl.com/2vzuvpn) while Australia’s Red Cross Blood Service has also indefinitely deferred donors who have been diagnosed with ME
(http://tinyurl.com/363kamw). Guidelines in the United Kingdom have restricted ME patients from donating blood whilst The National Cancer Institute in the US has reinforced the need for donations to be turned down (http://tinyurl.com/355or5r)

Although the Health Information & Research department at the Ministry for Social Policy in Malta was alerted by our support group a few months ago and indeed appeared to show an interest; Malta’s public health officials have not, to date, issued an order that withholds ME blood donations.

We are seriously concerned about the potential threat to our country’s blood supply, due to the organic nature of this disease and the infectious agent at work, and request that our local Chief Medical Officers initiate an immediate prohibition of blood donations from people diagnosed with ME, especially until there is more scientific literature on the possible viral link.

ME Sufferers Malta calls on the government to join other European health ministers/Chief Medical Officers at the 5th Invest in ME International ME/CFS Conference 2010 in Westminster, London, on 24th May in order to meet with the leading experts on ME and to learn about the latest biomedical research into ME and experiences in diagnosing and treating ME.

Log on to: www.mesufferersmalta.org or contact us at info@mesufferersmalta.org or write to ME Sufferers Malta, P.O. Box 25, Pieta, PTA 1310]]>